Dementia is a common and costly neurocognitive degenerative disease characterized by the progressive deterioration of intellectual abilities including memory, learning, comprehension, language, orientation, and judgement. In general, people with dementia (PwD) display a subset of the following symptoms: progressive memory loss, impairment in cognitive function, speech impairments, declined control over focused movements, changes in personality, deterioration in emotional control, social behavior, motivation, and increasing difficulty in carrying out daily living activities. Per the Alzheimer's Association, more than 5 million people are living in the US with AD and by 2050, this number could rise as high as 16 million. In 2017, AD and other dementias will cost the US nation $259 billion. By 2050, these costs could rise as high as $1.1 trillion.
The effects that dementia has on a person's daily life can be placed into four categories: Cognitive (i.e. difficulty in recognizing people and places, remembering details); Functional (i.e. difficulty in completing everyday tasks and activities of independent living, problems following social cues and slowed reactions); Behavioral (i.e. loss of social skills, overly active response to changes or stimuli in the environment, repetitive behavior patterns and inappropriate responses or behaviors); and Psychological (i.e. irritability, mood swings, frustration and anger with self and others, changes in personality, anxiety, and depression) (World Health Organization, 2015; Alzheimer's Disease International, 2015).
Most of the people with dementia live in a community and are supported by both family and friends as well as professional caregivers and services. More than 15 million Americans provide unpaid care for people with AD or other dementias. In 2016, 15.9 million family and friends provided 18.2 billion hours of unpaid assistance to those with Alzheimer's and other dementias, a national contribution value of $230.1 billion. Alzheimer's takes a devastating toll on caregivers in terms of substantial emotional, financial, and physical difficulties and hardship. (Alzheimer's Association, 2017).
Significant challenges and unmet needs exist in assisting PwD during the progression of their disease. Aside from physical problems (i.e. handling objects, loss of eyesight and hearing, incontinence) the most frequently identified unmet needs are in the areas of information (i.e., on the condition, treatment, prognosis, care and support possibilities, care service appointments, etc.), memory problems, communication, and psychological distress (i.e. anxiety). Quality of life (QoL) issues of PwD that have been identified include physical and mental health, social contact with family and friends, being useful to others, sufficient meaningful activities during day time, enjoyment of activities, self-esteem (being respected by others), lack of orientation in space-time, self-determination, safety, and freedom. PwD require reinforcement of identity, episodic memory, assistance against apathy, and most importantly the facilitation of all aspects of communication and motivation to express opinions, thoughts, wishes and fears and reinforcing their feelings of social belongingness. Education, psychological support, engagement with social services and charitable groups are all recommended but are problematic for individuals living alone.
General care and psychosocial measures are the mainstay of care management. Family caregivers, neighbors, and friends can meet some of needs of PwD, while professionals and healthcare providers meet others. Despite the efforts of these informal and formal caregivers, not all the needs of PwD can be met. The reasons for this include the limited time that both informal and formal caregivers have available, and the lack of, or limited availability of professional services tailored specifically to the needs of PwD. Dementia can make it more difficult to communicate with others. As the syndrome progresses, self-expression becomes harder and the decline in the ability to communicate with others leads to isolation. In addition, the needs of the caregiver become increasingly relevant as the disease progresses. The constant pressure to meet their relative's needs for assistance and support can result in debilitating levels of stress for the caregiver, resulting in the affected person's placement into long-term care. Higher caregiver burden is reported with dementia people who either are a spouse, older, or more functionally or behaviorally impaired. From a caregiver's perspective, decreasing the number of interactions required to complete a daily living activity has a direct positive impact on caregiver burden. Even small decreases in caregiver burden have been found to alleviate the prevalence of depressive symptoms in caregivers of individuals with AD. This can lead to more successful informal care, resulting in lower medical costs and delayed long-term care placements. Therefore, combined support programs, focused on the needs of both PwD and caregivers, are more effective.
Products and services have emerged in the market to make to the life of PwD easier as well as help caregivers and family members to take care of them. However, despite all efforts for covering most of PwD sufferers needs, it is challenging to find a means capable of aiding them with daily activities combined with memory reinforcement, enhancement in feeling safe, and maintains their social contacts. In addition, the need for personalized and context-sensitive information is lacking and difficult to obtain for all parties given the personal and contextual factors, such as the symptoms of PwD, the relationship between the caregivers and PwD, caregiver characteristics, utilized coping strategies, and the quality support systems available to the caregivers. The need exists for a more flexible, personalized care, and support that is fully in line with the differing needs of patients, caregivers, healthcare providers, and services.
Various pervasive and assistive technologies ranging from Internet applications, mobile devices to smart homes have been employed to assist and support PwD and caregivers with daily activities, safety, leisure, and providing information. These products include automatic pill dispensers, telephones with the photos of frequently call people, which contribute to the support for memory and social contacts, complex and complete tracking devices, using Global Positioning Systems (GPS), that also assist in locating people with dementia when they happen to “wander.” For people in the early stages of dementia who live at home, these technologies are particularly useful for keeping users independent while being socially engaged with others. The beneficial effects of computer systems have been observed on orientation, feelings of anxiety, and independence in patients suffering from AD. Besides this, implementing monitoring technologies and detection devices or alarm systems inside and outside the homes of elderly persons are useful to enhance (perceived) safety and security of the person suffering from dementia as well as caregivers. Internet-based applications designed to provide caregivers with clinical, decision-making, and emotional support have shown to be beneficial both to caregivers and to PwD. While some of these assistive technologies (i.e. digital calendars, reminders, location tracking) are particularly useful, the existing solutions are highly fragmented leading to very low adoption and few widespread acceptances.
Nonetheless, despite all the pervasive healthcare technologies, products, and services, available to enhance and improve the QoL of PwD and caregivers, an integrated solution, at a minimum, capable of: a) supporting symptoms of dementia (the most frequent one being the loss of memory) and intervention; b) facilitating social contact and company; c) supporting daily life activities; and d) health monitoring and perceived safety, is lacking. In addition, family caregivers want information on diagnosis, prognosis, treatment, and instructions to care for their love ones suffering from dementia. The need for support for the symptoms of dementia refers to all types of instrumental support in a person's daily life activities, including support to enhance participation and supervision/guidance, and ideally non-pharmacological interventions (i.e. cognitive stimulation, training, and rehabilitation). The need for social contact and company refers specifically to ways of staying connected with family, friends and the social environment as well as feeling useful. The needs for health monitoring and perceived safety refer to the wish to be cared for and to feel safe during disability and disease progression as well as the comfort of caregivers knowing that their loved ones are safe.
Therefore, the need exists for a pervasive integrated healthcare solution to support PwD, caregivers, and healthcare providers in the management of neurocognitive and neurodegenerative conditions, syndromes, and diseases including dementia and AD. The integrated system should incorporate comprehensive and optimal methods for the support of patient memory, social contact, daily activities, patient safety, support for caregivers, and feedback communication with healthcare providers. Such a system should enable a voluntary, active, and collaborative effort between PwD, health care providers, caregivers, and family members, in a mutually beneficial manner to improve independence, improve QoL, and or slow the progression of symptoms and disease.
Through applied effort, ingenuity, and innovation, Applicant has identified a number of deficiencies and problems with systems and apparatuses for the management of neurocognitive and neurodegenerative conditions, syndromes, and diseases including dementia and AD. Applicant has developed a solution that is embodied by the present invention, which is described in detail below.